Carla is a mother, humorist and writer. She writes about life, art, politics and the things that scare her.

Wednesday, May 12, 2010

“I’m Singing”

The Penultimate Musing on Carla Zilber-Smith’s blog, by Mac Zilber.

It’s one in the morning. She’s screaming in pain. It takes a lot of pain to make her shout, you see. She can barely talk at quarter-volume most of the time, and her default pain level, as she will say later in the day, is a 7.5 out of ten. She has a high hurts to hertz ratio. This is a ten.

“My arm is all fucked up,” she weeps, her face a cacophony of agony. I am assured by her nighttime caregiver, Alexa, that all is well, and that I can go back to sleep. Alexa moves her bed into Carla’s room. I go back to sleep.

There’s a knock on the door.

Carla wants to see you.

What time is it?

Six AM.

I don’t hesitate. Well, that’s not true, I do hesitate. A few precious moments. There’s such a low supply of them, and a high demand. Note to self, no more hesitation. I go into her room and she is choking on mucus. I slap her on her back, attempting to dislodge the mucus. No dice. I try again, and again. “Is this how it’s going to happen. Will she pass away violently in my arms?” Finally, after several hour-long minutes, she inhales and I exhale. A symphony of relief.

That one was life or death, she says. Does it count as saving a life if the life is ending no matter what we do? I wonder that every time I stop her from choking. It’s like trying to keep the sand on the top half of an hourglass, or trying to catch leaking water in a colander. I’m Sisyphus, pushing the stone up the hill ultimately to have it roll down. She is Prometheus, bringing light to those who love her, and undergoing subsequent agony. At least, unlike Prometheus, the hourglass will give her a way out. I go back to sleep.

It’s 9 AM. There’s another knock. I go into Carla’s room. She is in her bed surrounded by loving friends. The room is filled with cut-outs of butterflies and hummingbirds, some on the wall, some hanging on the ceiling. When she speaks, it is almost inaudible, but I always know what she is saying. Beethoven is playing on the speakers in the room. She mouths words that nobody can decipher but me.

“What was that?” A friend inquires.

I smile. “She says Beethoven is a buzz kill. She wants to hear ‘No Rest For The Weary’ by the Blue Scholars.”

http://www.youtube.com/watch?v=JIqMIrmpUjc

She smiles. Hip-hop, poetry, people who love her, how could any place be better than this?

There’s no rest for the weary, just another day grinding up stones, until they turn into dust.

“I’m singing,” she says, as I hold her curdled, immobile hand. “I’m singing.” How poetic and meaningful can two words be? If she were to pass away at that moment, I think she would have no complaints.

I then play her a funny and cheery song that is, ironically enough, about prescription drugs. She takes 23 of them.

“I feel fantastic, and I’ve never felt as good as how I do, right now, except maybe when I think of how I felt that day when I felt the way that I do right now, right now.”

The irony doesn’t escape us. We should be crying, weeping. We’re listening to the happiest song in the world.

It’s noon, and I suggest that we watch the old Twilight Zone Episode, “Nothing in the Dark.” It opens with the timeless voice of Rod Serling.

“An old woman living in a nightmare, an old woman who has fought a thousand battles with death and always won. Now she's faced with a grim decision: Whether or not to open a door. And in some strange and frightening way, she knows that this seemingly ordinary door leads to the Twilight Zone.”

In the episode, a young Robert Redford plays a wounded police officer, who is helped by an old woman who is convinced that every man she meets is secretly “Mr. Death.” After Redford reveals that he, in fact, is Mr. Death, he says to her, “Take my hand, mom.” “When do we go,” the old woman implores Robert Redford. “We have already gone. Was that so bad? You were not torn asunder. What you thought was an explosion was a whisper. What you thought to be an end, a beginning.” She looks in the mirror and sees herself on the floor and no longer living. She smiles, and they walk arm-in-arm outside.

Nurses from hospice arrive. They are not the ordinary ones, but they are capable and confident. They tell Carla that another nurse said that the oxygen tank, which will be arriving soon, would help her “Go softly into the night.” Carla, characteristically, says “Tell him that he fucked up the quote, it’s ‘go softly into that good night.’” Everybody laughs

The nurse tells Carla that, if she and Carla never get to meet again, it was a true honor to meet her.

I love my mom. I want you all to know that she is probably quite close to going softly into that good night. It is heart-rending, but eventually the sand goes to the bottom of the hourglass.

You are possibly the finest man I know, Mac, smart and funny and generous.

When my dad (who was a drug addict and a pain in the ass) died suddenly when I was young my dad's friends told me how lucky I was to have my dad's genetics, because he had been a genius and the funniest person they'd ever known. No one had ever said anything so kind to me before. I realized at that moment how all the years of hearing what a jerk my dad was, had been slowly destroying my sense of worth. If my dad was a jerk and I was related to him, then wasn't I a jerk too? But to hear the wonderful things about him, to hear how deeply he'd been admired despite his problems (and he was a genius and he was hilarious) had made me so happy.

I know you hear every day what a treasure your mom is. How vital and beautiful and important she was to so many people. And by god, you carry that in you, Mac. You are one lucky person to be genetically related to one of the finest women who has ever walked this planet.

But, it goes both ways, because Carla sure hit the jack-pot when she had you. :) You are the kind of man that mothers all over the world wish they could claim as their own son. :)

Remarkable, beautiful and heartbreaking: this post, the comments before mine, and the web of love and worship that you've woven, Carla. We've been your world of Wilburs. Thank you, thank you, thank you. I hope that good night is FUCKING AWESOME.

Carla and Mac, it was great to meet you on-screen at Hot Docs in Toronto. I'm sorry we couldn't have had a lengthier acquaintance. However, because of Mac and the Leave Them Laughing team, your voice, your gifts, and your nice_rack will live on.

Thanks, too, for the lessons about laughter as lube, crossing things off the fuck-it list, and finding inspiration and hope in the little things. Many of us spend our lives afraid, usually without good reason. We need to listen to those who burn more brightly than the rest. I think you know who I'm talkin' about.

Ditto what everyone else said, but especially what Kim had to say.Mac, you probably don't remember me. I work for MDA, and interviewed you for the summer camp program. I was the red head. You and Carla have left a huge impression on me. Your relationship seems so loving and unique. I hope my daughter and I can have a relationship like yours and Carla's. Hugs to you both... Jennifer

Fuck going gently...we all get to rest when it is done. All my heroes (my father, too many brave artists to name) never went quietly, they made a hell of a lot of noise...left an impression...just like Carla does.

My body is in LA, my heart and soul hope to be in the room over the next few days, Carla my dear.

Mac, I am Alex's (one of Carla's caregivers) mom. I was in SF earlier this week and had the good fortune to meet Carla and Jack. The 15 minutes I spent with her will stay with me forever. She is an amazing woman. Having just read your note, all I can say is ... you are an amazing soul - so young; wisdom well beyond your years. My thoughts remain with Carla, you, Jack and all the caregivers.

Mac, I am Alex's (one of Carla's caregivers) mom. I was in SF earlier this week and had the good fortune to meet Carla and Jack. Carla is an amazing woman and the 15 minutes I spent with her will remain with me forever. I just read your recent post and cried...so much wisdom in such a young man.

My thoughts remain with Carla, you, Jack and the caregivers. May you all find peace.

Thank you to a most inspiring, endearing, and beautiful women, who leaves footprints of GIGANTIC proportions, and complete with tattoos!Carla, we will CHERISH you in our hearts, we will HONOR you, and love you FOREVER, and we will miss you each and every day.Teresa

Thank you Carla, though meeting in cyberspace, it was certainly nice to have met you. You've done a wonderful job, Mac seems like a loving and capable human being.Perhaps we shall all meet on the other side, somewhere in the universe. The pleasure will be mine.

And thank you to Mac for being such a stand up gent. Cheers to you both.With much love and peace, John

I think continually of those who were truly great.Who, from the womb, remembered the soul's historyThrough corridors of light where the hours are sunsEndless and singing. Whose lovely ambitionWas that their lips, still touched with fire,Should tell of the Spirit clothed from head to foot in song.And who hoarded from the Spring branchesThe desires falling across their bodies like blossoms.

What is precious is never to forgetThe essential delight of the blood drawn from ageless springsBreaking through rocks in worlds before our earth.Never to deny its pleasure in the morning simple lightNor its grave evening demand for love.Never to allow gradually the traffic to smotherWith noise and fog the flowering of the spirit.

Near the snow, near the sun, in the highest fieldsSee how these names are fŠted by the waving grassAnd by the streamers of white cloudAnd whispers of wind in the listening sky.The names of those who in their lives fought for lifeWho wore at their hearts the fire's center.Born of the sun they traveled a short while towards the sun,And left the vivid air signed with their honor.

I love her line that Beethoven was a buzz kill. I love her request for the Blue Scholars. How cool must she be that she mothered the amazing being known as Mac Zilber, the young man who wrote this post.

I have read this loving and beautiful post a number of times over the last two days. Each time I want to write something. Each time my words fall short.

When you were a toddler, Carla told me a story about both of you happening upon a neighbor's child. I think you were about 15 months old (and already able to communicate like you were 6 years old.) You sensed the child's sadness in a way that Carla hadn't, and asked him about it. Carla described this story to me in total awe of your intuitive insight and empathy.

A voice from the distant past (what, ten years?} Just heard from Lisa Geduldig (via Facebook) that you've got ALS. Deep breath. Shit. I read your blog and watched the trailer for your movie. Love it. I'm sure other people with ALS have tried to write funny stuff about it. You really have. I will definitely see the movie. Love, Fred.

This comment is for you Mac...I have walked in your shoes. My mom passed away from ALS. I remember the sleepless, or very little sleep nights towards the end. It is so hard to have grief and exhaustion co-exist. I remember being woken by the caregiver and wanting to spring up but yet catch a couple of zzz's more...I hold you in my heart as I know so well what that particular brand of pain feels like. Please be peaceful and know someone out in cyberspace is sending you love...I so wish you never had to experience ALS...I so wish no one has too. Blessings to you and your Mom.Maureen

I already posted this but I put it in the wrong spot so here it is again. . . this is a quote Carla posted on this blog on March 26, 2008,

"from OUR TOWN by Thornton Wilder who puts it as well as anyone, methinks. Emily has come back to earth in this scene. She's already dead. Her mother can't hear her.

Emily: …but, just for a moment now we're all together. Mama, just for a moment we're happy. Let's really look at one another!...I can't. I can't go on.It goes so fast. We don't have time to look at one another. I didn't realize. So all that was going on and we never noticed. Take me back -- up the hill -- to my grave. But first: Wait! One more look. Good-bye , Good-bye world. Good-bye, Grover's Corners....Mama and Papa. Good-bye to clocks ticking....and Mama's sunflowers. And food and coffee. And new ironed dresses and hot baths....and sleeping and waking up. Oh, earth,you are too wonderful for anybody to realize you. Do any human beings ever realize life while they live it--every,every minute?

Another soul out here listening deeply. to both of you. which leads to listening to the air and the silences and birds and every bit of laughter and there go some sirens and the hum of the fridge and my son turning in his bed. the listening is wide. and infinite. thanks for reminding me. you're in my heart. I'm gonna dance more. in the street, down the stairs, at the bus stop. 'gnight with love.

Yoooouuuu are singing Mac, and it makes my heart break with sorrow and with joy. You are a tribute to your parents - and the magic person that they knew you were from the moment you were born. You combine the best of both of them, and are even greater than the sum of the parts.

I attended a screening of "Leave Them Laughing" in Toronto last weekend. The impact on me will last a lifetime. I am in awe of Carla's spirit and Maclen's wisdom. After reading Maclen's post, I am reminded of Patrick Watson's beautiful song "Big Bird in Small Cage" and I think of Carla.http://www.youtube.com/watch?v=D3aD5alrJ78

Thanks, Carla, for making us laugh and sing, as we weep. You are an inspiration.

"Being with" Carla through this blog has been a wonderful experience for me. I never met her. I only discovered this blog a month or two ago.

What a gift, Carla, this blog, glimpses of the loving radiance of community with Carla at the fulcrum. . . rings of love emanating all around her. . . like ripples moving through water. . . love love and more love. . .

Mac, you have deep empathy for your loss. You have a fantastic mom and clearly you are a totally awesome man in part because she is your mom (I know you called her Carla and know you just called her 'mom' on FAcebook. . . I know what can be gleaned from the anonymous internet. . .)

My wish for you, Mac, and for all who knew and loved your mom, much peace at this time of great loss. I wish you unending joy and bliss.

But I also wish you all the rolling waves of sadness and heartache. I don't know you, Mac, and you sure don't need my permission to feel, but I am a mother and my mother's heart is grieving for your grieving heart. I hope people who love you live and in person are supporting you in being as sorrowful as you feel like being, if that is how you go. Feel any feelings and if you feel like deep waves of sadness, I pray that you won't waste any of your fine life force trying to suppress that sadness. Feel what you feel. The ocean carries every wave to the shore. Let your feelings wash over you, ride them, feel them. It must hurt like a motherfucker to have lost her. I know you have had time to ready yourself for her death but it still has to hurt and it will hurt again. Love yourself every moment, as best you can. You know Carla will be loving you as much as she can, wherever she is.

when/if you do find yourself hurting real bad, feel it all and, as best you can, feel the next feeling. You will be happy again and all the endless gifts of Carla will still be in you.

As someone who has just recently gone through taking care of a loved one battling this horrific disease, I can picture it all - the room, the choking, the parade of people. I know that it is real tough and tiring; yet at the same time it is holy work (in a non-religious sort of way). Reading this blog and seeing the doc has been both painful and healing. Thanks for having the courage to share - both you Carla and your son. Not to diminish anything Mac (and others) have done - but one thing I learned was that it takes a village and those who give, get. We are all richer now I think.

Thank you so much for sharing your self with us, Carla. Thank you Mac for this beautiful and heartbreaking post. It is not hyperbole when I say you have changed how I think about my life, about life in general. You have honored us with you presence. I think of you every time I make toast. I didn't know you but I will always love you. Peace, sister.

I lost my brother to ALS 18 years ago to the day Carla posted her last post. I happened on her site by accident over a year ago, and have been in awe and inspired ever since. It is clear to me that her her son has inherited a good bit of that 'awesomeness'. My words are inadequate.... yours are beautiful. Sending a heartfelt hug from Texas.

Penultimate. What a difficult word to hear. Mac and Carla, I found a four-leaf clover and made a wish that you and your family would find strength and peace. I saw a butterfly - it was flying crazily and nearly hit me in the head - I thought of you. Thank you both for sharing so much of yourselves and giving me guidance on appreciation and love and life, and for making even simple things I see nearly everyday a stand-out reminders of the lessons I've learned.

Carla, the world is a lot more serious without you. I never met you but feel like I knew you my whole life. Your beautiful soul and time on this planet prove that it was not in vain. Go rest now, everyone will be alright.

I once lay atop a mountain gazing at the night skyIt was still, quietI was alone and felt the intensity of isolationA sudden burst of light and energygrabbed my attentionMy pulse quickened as I watched the brilliance of what I sawA star, shooting upward into the heavens it’s light penetrating my soulA brief moment in time, but leaving me forever changed, forever inspired, forever in it’s aweOne moment – never forgotten

It's always been hard for me to post a comment on this blog that didn't seem trite or inconsequential. Both Carla and Mac are hard acts to follow! and so are their readers, but it feels important to at least share some thoughts about how I feel so here goes...

Carla, Mac, Family & Friends,You are in my heart and on my mind.

Carla, I remember you writing here about the bitter and the sweet after your diagnosis. I guess that's how I feel now. I'm sad you're no longer with us and I'm glad you're no longer suffering.

The world just doesn't seem as bright or good knowing you're not on the other side of this comment and I can no longer come here and find insights, inspiration, laughter, tears or just find out how you're doing.

Strong, wise, inspiring, loving, beautiful, kind and funny. A one of a kind woman, friend and mother.A one of a kind son.

No one will ever know how many lives you've touched and changed. People known to you and unknown. A precious gift that will keep on giving as more and more people meet you through the blog, the film and the stories told by friends and family and the amazing Maclen.

Thank you for sharing your life with us and teaching me to see what's really important and to appreciate my life -- at least for a moment -- every single day.

I'm grateful you walked this earth while I was here and our paths crossed.

Somewhere a radiant redhead is dancing and singing with a glorious & sassy smile on her face and always will be in my heart and mind.

i just now learned of carla's passing on may 17. may she rest in peace. everlasting peace. she was truly one of a kind and will continue to shed light on life and death in many profound ways. my heart goes out to her and her family. much love, always...

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About Me

I used to be a solo performer, singer, writer, director, actor and college teacher. Now I have ALS so all that's left is writing. I'm curious. I have an amazing son named Mac who is 16 and wise beyond MY years and who tells me I'm good looking for someone who is dying and old which is worse than saying nothing but i still love it. I am playful and I love life more than I can express.